The Manhattan Project

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When the anesthesiologist asked Graham which flavor he’d like for the drugged oxygen kids often get to initiate the anesthesia process before surgery, he responded with complete certainty. “I usually get bubble gum,” he explained, nodding coolly. Like they’d asked his favorite color. It wouldn’t surprise me if Graham, who has mild cerebral palsy, has at six spent more time in hospitals than many people do before forty. And as he settled onto the table in the operating room—for the first time, completely unafraid—it occurred to me that even though we’d told him he was having surgery on both legs, and even though we explained that he might be in some pain afterward, and even though we’d described in kid-friendly detail that it would be a long road back to his version of normal, he had no clue what was happening.

Neither did we, really. Going in that day before dawn, we knew that choosing the New Jersey surgery, as we came to call it, meant travel to the east coast and a week’s worth of recovery and therapy in New York City afterward. We knew that compared to the more traditional approach to hamstring and calf muscle lengthening, which was the ultimate goal of the procedure, the New Jersey surgery (really called selective percutaneous myofascial lengthening, or SPML, or sometimes “percs” for short) required far less superficial healing and a significantly shorter recovery period. We also knew that none of Graham’s Seattle therapists—a smattering of well-trained, intuitive, and effective physical and occupational therapists and alternative medicine folks—had ever coached a kid back after SPML surgery. But ultimately, we didn’t know what would happen in the OR. In theory, part of the reason SPML works is because rather than completely anesthetizing the patient, the surgeon keeps the kiddo partially awake during the surgery, so that he can make changes to the muscle based on active muscular response rather than based on assumptions he makes on how the muscles work while watching videos of, say, the kid walking around in Seattle. So while we went in planning for Graham to have various “bands” of muscles lengthened (in ways not appropriate for detailed description on a food blog), we didn’t know how difficult those bands would be to stretch, or how many bands might be effected, or exactly where the needed band-lengthening might be located on his body.

While Graham was coming out of the lighter anesthesia (to be clear, he doesn’t remember anything), the surgeon came to see us in the waiting room, briefly relieving us from the clash between the receptionist’s gospel music and the emergency coverage of that morning’s lightening storms on Long Island. He looked at us, then ran his palm down the entire length of his face, with all the fingers on one side and the thumb on the other side, like he was wiping a memory off his brain so he could give it to us. The surgery had been longer and more involved than he’d expected. While he’d known Graham’s hamstrings and calves were very restricted, he was quite surprised at just how tight they’d been, given Graham’s level of function. It made me wonder just how much pain Graham had been in all these years, walking around with his little arm crutches day after day, toes on point like a ballerina’s from the calf and hamstring tension his altered neurology caused. “And we ended up doing the triple play,” Dr. Nuzzo added, describing how he’d also loosened bands in Graham’s adductor muscles. “The recovery will be longer than we talked about yesterday, but he’ll do great.” All I heard was his New Jersey accent. Da recovery will be loingah dan we tawlked about.

Graham came out of surgery hurtling angry words and ultimatums. “I’M NEVER GOING ANYWHERE UNTIL THESE CASTS ARE OFF,” he hollered, sobbing. “YOU CAN’T DOOOO THIS TO ME!” He tore violently at all the various tubes and machines connected to his body. Nurses came running with needles. As the valium set in and the IVs came out, he calmed down, and we eventually made our way back to our dank, dark old hotel room, where we more or less stayed for the next 48 hours, watching all six Star Wars episodes, adjusting and readjusting the cantankerous air conditioning unit, coloring Graham’s casts with Sharpies, and generally coaxing our drugged little boy through his post-operative discomfort. Seeing him so immobile was sad; watching him realize that he’d be depending on us to sit up and sit down and use the bathroom was heart-breaking. He’s worked so hard to be independent, but I don’t think I realized how much pride he took in doing things himself.

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Once the wounds had stopped bleeding and we’d passed the most acute recovery period, we moved into a small apartment on the upper west side of Manhattan. We rented one of those beefy off-road strollers—the kind we’d given away just the previous year, certain we’d never have a use for it again—and started in on a sad-kid-unfriendly routine of twice-daily neurological therapy and supposed sightseeing. It was a different view of New York, to say the least. We thought spots like the Natural History Museum and the Liberty Science Center might distract Graham from his pain and annoyance, which they did—but only until they frustrated him more. Each time the initial excitement over a place like the Lego store wore off, he just got depressed. No child wants to be stuck in a stroller and on therapy tables all day. He was a sad sack, as an old Cape Cod friend would say.

In my head, the whole time, I called it The Manhattan Project, in spite of the militaristic implications. But we were in Manhattan. And our world had totally changed.

On our last day, a full week after surgery, we met some friends at a grassy park along the Hudson. They brought their five- and two-year-olds, and much to our surprise, a game of hide-and-seek sprung up. Out of nowhere, our completely sedentary little patient was crawling around on the grass, even rolling down little hills, doing what he could to smear New York City mud into his unwashable casts and bruised little knees. The combination of friendship and dirt had finally propelled him back into the universe. There were grass fights. And even smiles.

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After returning the stroller the next day, we took a car to the airport in Newark, New Jersey, carrying our two weeks’ worth of luggage and a big, still mostly immobile boy. While my husband checked us in, I explained to Graham that we’d be borrowing a wheelchair to go from the check-in area, through security, to our gate. He burst into hot, frustrated tears. “I can just walk,” he insisted. (Until that point, he’d put a little weight on his legs to use the bathroom, but hadn’t taken steps, even with assistance.) He awkwardly hoisted himself to his feet with his walking sticks, and promptly crumbled to the floor. We gathered him up and placed him back on the bench. “Okay,” he conceded. “But I’m only using it until security. Then I’m walking to the gate.” We nodded.

The airport’s security line was vacant, but dutifully cautious. “Hi there, buddy!” cheered a friendly TSA guy with blue latex gloves. “We’re going to wipe this piece of paper over your chair, and then you can go, okay?”

Graham was quick to spit out a response. “This isn’t my chair!” he protested. “I don’t have one of these.” He pushed one of the armrests away from him, like he was distancing himself from something smelly. “I don’t even know how to use it.” It was heartwarming to see my handicapped kid identify so strongly as not handicapped, but as we wheeled toward our plane, I could only wonder how long it would be until Graham was on his feet again. Days? Weeks? Months? We still didn’t know. We’d arrived in New Jersey with a happy, mobile Graham and we were leaving with a much altered, much sadder, much less capable version of the same and no real known path back to normal (or better).

Now that we’ve been back in Seattle another ten days, Graham’s trajectory seems positive, albeit bumpy. At home, he’s basically crawling and participating in life per usual if he has a friend over; it’s like the mere presence of another small body erases the physical memory of the surgery. (When they leave, he collapses on the floor in a teary heap.) In therapy, he started bearing weight on his legs, and even walking in short bursts between two parallel bars. We got out the walker he used before his arm crutches, and he’s started taking a few steps at a time with that. He insisted over and over that taking the leg casts off would leave him magically new and strong. But predictably, those casts came off, and the proverbial rug was ripped out from underneath us. Each day is different. Every morning, he’s sore. He asks if he can play, but typically, we wake up and go straight to therapy. And each day, he gets stronger.

The Manhattan Project has knocked us all off balance, really. My husband’s back is wonky from lifting and carrying Graham. I woke up with mysterious searing foot pain yesterday that is completely gone today. It’s been the kind of month that takes you so many places that you no longer know how much strength it takes to close your own refrigerator. At home, even ten days later, my husband and I strangely keep swinging our fridge door almost closed, but not quite.

So in the kitchen, it seems to make sense to stick with the basics—to things that we know will always work. Things we trust Graham will eat, because it’s clear his body needs good fuel right now. Below is a recipe for one of his favorite things—we call it “yellow chicken” around here. It’s not especially pretty, but in our house, it’s reliable.

Today, we’re going camping, and taking a few sticks of yellow chicken to eat in the car on the way. It feels crazy, packing everything up again between therapy sessions and heading into the mountains. But since the surgery, one thing has become clear: nothing motivates our kid like hanging out with his buddies. So off we go, in search of friendship and dirt.

Also: Check out my kids’ lunch series this week over at The Kitchn, called Think Outside the (Lunch) Box. There’s info on what to pack and how to pack it, and (especially for other moms of kiddos with fine motor challenges) the best lunch box ever.

Yellow Chicken Noodle Bowls with Broccoli and Peanut Sauce
Yellow Chicken Noodle Bowls with Broccoli and Peanut Sauce (PDF)
In our house, kid chicken consumption is erratic; Graham will eat chicken legs right off a roasted bird, but won’t eat plain chicken breast meat. One of his favorites, though, is the kind of turmeric-tinged chicken satay we order from our local Thai take-out spot. This version is made for him—grilled over medium heat, not high, so the chicken gets marked but not charred, and served with a coconut-based peanut sauce that my husband and I make mild, then kick up with a bit more sriracha.

Use this recipe as a guide for any similar dish—you could use soba noodles and leftover grilled peppers instead of the broccoli, pork instead of the chicken, etc.

12 six-inch bamboo skewers, for the chicken

For the bowl
4 tablespoons canola oil, divided
2 teaspoons freshly grated ginger
1 teaspoon ground turmeric
1/2 teaspoon kosher salt
1 pound boneless chicken breast meat, cut into 1/2-inch strips the short way
One (14-ounce) package pad Thai rice noodles
2 heaping cups broccoli florets (from a 3/4-pound head of broccoli)

For the peanut sauce
1 (13.5-ounce) can coconut milk
1/2 cup creamy peanut butter
2 tablespoons fish sauce
2 tablespoons lime juice
1 to 3 teaspoons red Thai curry paste, or to taste
2 teaspoons freshly grated ginger
1 teaspoon sugar
1/2 teaspoon kosher salt, or to taste

Place the skewers in a shallow pan and add water to cover. Set aside to soak for about 30 minutes.

First, marinate the chicken: In a mixing bowl, stir together 2 tablespoons of the oil with the ginger, turmeric, and salt, then add the chicken breast strips and turn to coat all the pieces evenly. Cover and refrigerate for about 30 minutes.

Next, bring a large pot of water to a boil. When it boils, turn the heat off, add the rice noodles and submerge them. After a few minutes, stir the noodles, then add the broccoli florets, and let both sit for about 10 minutes in the hot water, until the noodles are al dente and the broccoli is bright green. Using a slotted spoon, scoop off the broccoli and transfer to a bowl. Drain the noodles in a colander, rinse well with cold water, transfer to a big bowl, and toss with the remaining 2 tablespoons canola oil. Set aside.

Meanwhile, in a small saucepan, combine all the sauce ingredients. Bring to a simmer over medium heat, whisking until smooth, then simmer for 5 minutes, stirring occasionally. Season to taste with additional curry paste and salt, and set aside.

Preheat a gas or charcoal grill over medium heat, about 400 degrees F. Drain the water off the bamboo skewers. Thread the marinated chicken strips the long way onto the skewers.

When the grill is hot, brush the grates as clean as you can. Grill the chicken pieces for 4 to 6 minutes, turning once only when the chicken releases easily from the grill grates.

To serve, toss the noodles with about two thirds of the peanut sauce, then pile the noodles into bowls. Top with broccoli and chicken skewers, plus additional sauce to taste.

12 Comments

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12 responses to “The Manhattan Project

  1. franticfoodie

    I have been following your journey since Graham was born. I just can’t imagine a better writer and storyteller then you. After days of running around non-stop I find myself finally sitting down to read and listen because all I want to hear is how things are going and to listen to your story.. And I am in awe by your precious kid and family. Graham is such a star!

  2. Beautiful and heart aching post. Sending so much love to you all. Looking forward to hugging you when next we meet.

  3. Sending our love to you, Jim and Graham. You are all such fighters – an inspiration to all. Prayers for a continued recovery and a place you never thought possible. Love from Chicagoland!

  4. That kid. Thank you so much for the update, you guys have been on my mind. I wish I was meeting up with you guys for some yellow chicken, it sounds like a great start to a fun weekend! Katy

  5. Thanks for your support, y’all.

  6. Oh man, Jess. We’ve had our own version of surgeries and loss-of-function-in-the-name-of-gaining-greater-function with my niece and her arm and I am left in awe of these kids, who take so much and cope so well (considering all they have thrown at them), and the parents and families who support them along the way. You guys are so great. Hope Graham is dirty and smiling right now, and that you’re finding your way forward through the unknown.

  7. Pingback: Think Outside the (Lunch) Box | CareFridge

  8. I have been wanting to try a peanut sauce. This one sounds actually doable. I’ve sort of been reading and keeping to myself but wow – the fight you are all going through is just….wow. Bless you all.

  9. Megan Johnson

    Hi,
    We have a son with mild CP. Wondering how the outcome of this surgery was for your son? My best friend’s sister in law is Rose Modry and Rose thought we might be interested in your story…of course she forwarded this to us quite a while ago! I hope your son is doing well!

    • It has been quite successful for us in the long run–although, to be honest, it was one hell of a fall. Please ask Rose to get my email address from Lindsay, I’d love to discuss in full offline.

  10. Pingback: Tip Tuesday: 08/16/2016 Back to School Lunch Box Picks! | The Little Chef That Could

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